Table 3.

Patient Interview Themes.

Theme 1: The lay health worker intervention established a trusting and positive relationship between the patient and the care team.

The program at the VA made me feel special and taken care of during one of the most vulnerable states of my life. Getting diagnosed with a terminal illness like cancer is a shock to the system and this program let me trust the VA team taking care of me.

I think it’s sad that other patients don’t get this program at the VA because it really made me trust the docs and nurses that they are there for me. The program made me feel like 1 could be honest with what I wanted.

The lay health worker was so positive and a breath of fresh air, making me think about things and letting me know that they [the team] was all there behind me every step of the way.

It was so easy to talk to [the lay health worker] and it seemed like that was settin’ me up to talk to my doctors and it helped me to do that, I think.

I’ll be honest, I thought, this program was going to really waste my time. But a couple of minutes on the phone, I warmed up to it That phone number for [the LHW] was my go-to number ‘cause there was always someone to answer it right away for anything.

What’s different about this program is it made me feel cared for and made me feel like I could trust my cancer docs

You don’t know what to think, you know, after you get hit with this cancer thing. Then [the lay health worker] calls you up and gets you to feel better about the whole thing just by being there and listening.

Theme 2: The lay health worker intervention provided consistent and reliable guidance to patients when formulating and discussing decisions and preferences for care.

Well, it was good, this program, because it gave me a lot of education and materials to help me to make my own choices.

These things are tough. I don’t know how other people do it without a program like this. I didn’t realize that others have to do this on their own. It was nice to set goals and to go through all the forms like the directive and deciding who would make my decisions for me with [the lay health worker]. It made it seem less scary and kinda relieved once you did it.

Gettin’ a phone call at least once a week to go through what was important to me and whether I know why I got chemo was good. At first I thought it was duh I know but then there were times that I didn’t really know what was going on and if! really wanted all of it This program helped me to ask when I was confused and then make decisions for myself based on what and where my cancer was going.

I don’t like to talk about it—dying. Who does? But, I do like to talk about how I want to live. And that’s how the program framed it for me. In the time I have here on Earth, how do I want to live.

We all have to die and these things like talking about our wishes are important. But, unless this program forced me to do it, like really make me think and talk about what I wanted, I don’t think I would’ve done it I definitely would not have asked the doctor to help me to do it

Theme 3: Discussions about end-of-life care preferences need to be held frequently and become easier the more you have them.

Talking about dying and what I want when I die or how I want to die is going to change. And this program showed me this. When I was first diagnosed, I wanted to go through all the chemo and radiation and then when it stopped working after a month, I changed what I wanted. It was easier to think about what I wanted because I asked the tough questions like what is this for and is it going to make me live longer and how much longer. Getting the answers to these questions helps me to make these decisions.

We talked about it a lot during the program. What I wanted, when that may change, when would I want to talk about it again and how. And, we did, over and over and over, it seemed. Which was good for me. Now, if l live a bit longer, I will probably be able to do this on my own because it seems to be in my head to think about these things.

I could answer the questions before [the lay health worker] even asked because we went through it a couple of times. It was hard at first, to think about. But, then when you think about a time when you could be sicker and you know what you want at that time, then you come to that point when you are sicker, you don’t have to think about it because you had already thought about it when you weren’t at that point

These things [end of life care preferences] change. They aren’t the same the first time. The first time, I wanted to do everything to live, and that was it. Then when I ended up in the hospital for a week and then in a nursing facility for a couple of weeks, my wishes changed. I realized I wanted to just be at home to take care of my dog. I didn’t want to do anything that would make it so I would end up back in the hospital in that downward spiral. So, these things change and unless we are asked time and time again, the doctors won’t know.

It seems weird when you get these questions thrown at you right after you get cancer. But I was happy that I got these questions asked a lot because the first time my answers were different I wanted to live. But then I got sicker and my answer changed to, ‘do things to allow me to continue taking care of my dog.’ I have to think about these things a lot of different times for them to stick and my docs need to know how my feelings change after I go through something and especially when I get closer to the end.

It’s like, I don’t know. Something you really don’t want to do like talking about what you want when you croak. Or, rather, right before you croak. But, if you don’t do it, someone else will do it for you. And, if you don’t do it often, someone else will take what you said when you weren’t so close to croaking and think that’s what you wanted. The good think about this program is it taught me to speak up a lot and to speak up often, ‘specially when I change my mind about something.